Sunday, July 16, 2017

"The Exceptional Nurse: Tales from the trenches of truly resilient nurses working with disabilities"...book review from the UK

"The Exceptional Nurse: Tales from the trenches of truly resilient nurses working with disabilities" was reviewed on Amazon.com in the UK.

This book contains individual chapters written by nurses with a wide range of disabilities: their stories are testimony to the exceptional courage, flexibility and resilience they demonstrate whilst practising their chosen vocation. They bring these qualities to the workplace, as well as serving as role models and advocates to other students, patients, helpers and educators. For example, one nurse with diabetes brings a special ‘willingness to listen to patients talk about being sick, being hospitalised, frightened and powerless, and vulnerable.’

You will also find practical information on how to navigate ‘the system’ in order for reasonable adjustments be made and support accessed from a wide number of sources. A British readership would not be able to benefit from this information, as it is naturally culturally, linguistically and legally biased towards an American audience. For this reason only I would afford the book 4 stars, and would warmly welcome a similar publication geared in tone and content to readers in the United Kingdom.

In sum, this innovative and unique book is well written, clearly structured, extensively researched and moving. As such, it should be set reading in medical education.’


What do you think? Please share your thoughts....

https://www.amazon.com/gp/product/149540093X/ref=as_li_tl?ie=UTF8&tag=mynonprofit-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=149540093X&linkId=1673c74e608057ca0b48990818f7a8d8

Friday, July 7, 2017

Not a Sound: A thriller for nurses with disabilities!



New York Times bestselling author Heather Gudenkauf 's new book is fiction. But insights the author gained from being raised by a nurse and personally living with a profound unilateral hearing loss makes so much of the book ring true! 

"When a tragic accident leaves nurse Amelia Winn deaf, she spirals into a depression that ultimately causes her to lose everything that matters—her job, her husband, David, and her stepdaughter, Nora. Now, two years later and with the help of her hearing dog, Stitch, she is finally getting back on her feet. But when she discovers the body of a fellow nurse in the dense bush by the river, deep in the woods near her cabin, she is plunged into a disturbing mystery that could shatter the carefully reconstructed pieces of her life all over again."

The thriller is a great read...hard to put down!

I only wish the author had included more nursing career opportunities for Amelia Winn following the incident that lead to her deafness.

Love to hear what you think of the book.

Please leave a comment below.

Enjoy!

Donna


https://www.amazon.com/gp/product/0778319954/ref=as_li_tl?ie=UTF8&tag=mynonprofit-20&camp=1789&creative=9325&linkCode=as2&creativeASIN=0778319954&linkId=7478c4f24d6473634a26edb482ee17d2

http://www.heathergudenkauf.com/

Wednesday, June 7, 2017

Silent No More! Delnor nurse beaten and raped!


Attorneys representing two nurses and a nurse’s husband called a press conference to counter official statements that nurses taken hostage at Northwestern Medicine Delnor Hospital were not injured in a May 13 incident in which a jail inmate was shot dead by a SWAT team.

The horrific events at Delnor Hospital cannot be forgotten or pushed under the rug. Nurses need to stand together for much needed change.

With thanks to Janie Harvey Garner, RN (Show Me Your Stethoscope) for her passionate "shift report" on this situation.

And to Zubin Damania, MD (ZDoggMD) for sharing this story. He spoke with the nurse who was beaten and raped. Please share his call to action.

We can all do something! Share the story on social media, send a card or note of support, talk about it with your colleagues, family and friends. Silent No More!


Delnor Nurse
P.O. Box 394
Sycamore, Il 60178 
With thanks!!

Donna



Saturday, June 3, 2017

The nurse with dementia: Where do we go from here?

Gail Weatherill, RN, BSN

The British Royal College of Nursing (RCN) recently shocked many by passing a resolution that nurses with dementia should be supported to continue practicing as long as possible. Their reasoning was that most fears of these nurses constituted discrimination based on old prejudices and misconceptions.

The public, including many nurses, assumes that individuals are “suddenly struck incompetent” at the time of diagnosis. In fact, cognitive changes usually occur in minor, subtle ways over a matter of years.

There are many individuals with dementia who continue to lead productive lives for years after their diagnosis. Like those with other disabilities, they find ways to adapt their routines to compensate for a faulty memory. They write books, give talks to raise awareness, and weigh in on policy matters affecting those with dementia.

To better understand the unique challenges a nurse with dementia faces, I spoke with Frani Pilgrim, RN. Frani is an American nurse with Early Onset Alzheimer’s Disease (EOAD). Early Onset Alzheimer’s Disease affects those under 65 years old. It is increasingly more common among people in their thirties, forties, and fifties.

In January of 2016, Frani Pilgrim was busy in the Allergy and Asthma practice where she served as a nurse specialist. At 56 years old, she relished the “dream job” she had excelled in for the past ten years. But when she could not master the new electronic medical record system, both she and her coworkers began to wonder why.

Frani was caught off guard one day when her beloved physician mentor said to her, “Frani, you’re not yourself. Something’s wrong. We need to find out what.” With four generations of EOAD behind her, Frani suspected her fate even before neuropsychiatric testing confirmed it. Having watched her grandfather, father and a brother live with EOAD, Frani fully understood the weight of her diagnosis.

A year and a half later, Frani’s life has changed dramatically. Because of concerns about liability, she chose to resign her position at the time of her diagnosis, saying, “How would a family feel if I made a mistake, and they found out I have Alzheimer’s?” Exiting her nursing practice was “the hardest thing I have ever had to do. Nursing is different from other careers. It’s not a job. It’s who we are.”

Frani experienced a period of deep despair, “I spent one month in bed, crying.” “Nursing was everything to me, but I felt I had no choice but to give it up.” Over time, Frani moved through her acute grief and began to see a silver lining to her circumstances. Away from the stress and physical demands of nursing, her symptoms improved. With time on her hands, she focused on home and family relationships which deepened in a positive way.

“I’m a survivor”, Frani explains. “I’ve survived breast cancer, cervical cancer, and a near-death experience with asthma. But Alzheimer’s is different. You know there’s no going back.” Frani underwent driver’s testing at the Division of Motor Vehicles which she passed with flying colors. She plans to return once a year for testing, saying, “I know it’s not always clear to a person what their own degree of impairment is. I don’t want to take any chances.”

Today, Frani keeps physically active and is quick to share her experience with others. She recently enrolled in a clinical trial which gives her great comfort. “Even if it doesn’t help me, maybe it will help my son. I look at him and his physical resemblance to his grandfather, and I pray a lot.”

When I asked Frani what she most wanted her fellow nurses to know about her illness, she said without hesitation, “That people don’t become idiots when they are diagnosed.” She recounts the pain of family prejudice, including those who would no longer allow her to babysit her grandchildren once they learned of her diagnosis.

Alzheimer’s Disease and related dementias now affect over 5 million people in the US alone. Great Britain, Australia, Canada and Asia all face the far-reaching socioeconomic effects of dementia in an aging population as well as those with EOAD. As the average age of clinicians increases, the question of what to require of nurses with dementia is only due to become more common. Great Britain has chosen inclusion of nurses with dementia.

Additional questions arise such as, is a nurse with mild dementia a greater risk to patients than a stressed, exhausted bedside nurse? What about the nurse with diabetes whose cognition can drop with a low blood sugar? Or, a nurse with Post Traumatic Stress Disorder faced with a trigger? Are there teaching and some management positions that nurses with EOAD might fill?

A knee jerk reaction of, “That’s crazy! Patients must be protected,” may have to be weighed with the reality of mild dementia with minor lapses and an aging nursing workforce. One thing is for certain; this question will only arise more frequently in the years to come. It is already upon us and in need of answers.


Thank you Gail for shedding light on this important topic!

Please feel free to weigh in on Gail's point of view. 

With thanks,

Donna

About the author:
A practicing nurse since 1980, Gail Weatherill specializes in the care of people living with dementia. A graduate of the University of Virginia, she has obtained board certifications in Alzheimer’s education and care. Her years in critical care, home health and long-term care in the US and in Saudi Arabia influence her far-reaching perspective on nursing care. Gail resides in Charlottesville, VA where she can easily travel to her state capitol and the United States Capitol for advocacy work for dementia care and safe staffing ratios. You can find her at the site named for her professional alter ego, The Dementia Nurse ™. http://thedementianurse.com

Friday, May 26, 2017

Karen Daley: Nurse turned advocate after HIV diagnosis is Curry College commencement speaker

Karen Daley

Photo credit: Nicolaus Czarnecki

Curry College reports that Karen Daley spent more than 25 years as a staff nurse at Brigham and Women's Hospital in Boston until a needlestick injury infected her with HIV and hepatitis C.

An article written by Lindsay Kalter for the Boston Herald reports that Karen said:

"When I was first diagnosed, one of my nightmare fantasies was that I would fall, hit my head, start bleeding and not be able to warn someone”.

"So Daley shifted her focus. After she told close friends and family — she is one of seven siblings — Daley began researching needlestick injuries. She learned that, at the time, there were close to 600,000 each year in hospitals alone. Only about 15 percent of hospitals were making safer devices, like needle caps, available for workers."

"Daley began grueling treatments as she launched her lobbying efforts. Her hair thinning and skin a pale gray, she helped pass the mandatory reporting legislation in Massachusetts in 1999. The Bay State sees about 3,000 needle injuries each year."

"A year later, Daley testified before Congress in favor of a bill that would take needle safety measures from recommended to mandatory at health care facilities across the country. She was invited to the Oval Office to watch then-President Bill Clinton sign the “Needlestick Safety Prevention Act” into law on Nov. 6, 2000."

Her commencement address at Curry College included the following message to graduates:

 "When life takes unpredictable turns, when things happen that don’t make sense and aren’t in your plans, it’s not about life being unfair,” Daley said. “It’s how you find meaning and purpose in spite of that. Through it.”

Click on the links below to read more about Karen and her advocacy efforts.

Thank you Karen for giving so much of yourself and helping to make our workplaces safer!!!

Bravo!

Donna


Friday, May 19, 2017

Dr. Paul Coyne, nurse and stroke survivor honored with Crain's Award!

Paul Coyne, DNP, MBA, MSF, APRN, AGPCNP-BC

In June of 2015, I wrote a post about Paul Coyne titled: "What does a stroke and a career on Wall Street have to do with becoming a nurse with a disability?" In a word everything!
http://exceptionalnurse.blogspot.com/2016/05/what-does-stroke-and-career-on-wall.html


Paul's outstanding work and accomplishments continue!


FOR IMMEDIATE RELEASE
MAY 15th, 2017
PRESS CONTACT: press@inspiren.com

DR. PAUL COYNE HONORED WITH PRESTIGIOUS CRAIN’S HERITAGE HEALTHCARE INNOVATION AWARD

Dr. Paul Coyne, Present and Co-Founder of Inspiren, an innovative, nurse-led, healthcare start up, wins Crain’s innovator award with new technology focused on revolutionizing healthcare patient standard of care. 

MANHATTAN, NEW YORK – Today, May 15th, 2017, Inspiren celebrates their President and Co-Founder, Dr. Paul Coyne who was honored with the prestigious Crain’s Heritage Healthcare Innovation Award.  This award recognizes cutting edge applications of technology and rising stars in the healthcare industry whose innovations are making significant contributions in the areas of technology, research, or new approaches to healthcare systems.

The 2017 Heritage Healthcare Innovation Awards recognize the best of today's healthcare clinicians, administrators and researchers who are making quality and measurable improvements across the healthcare industry.  Dr. Coyne’s work through Inspiren, a nurse led healthcare technology company based out of New York City is focused on healthcare solutions that are practical, affordable, and will solve the challenges faced in hospital and nursing home environments today.

Crain’s specifically recognized Dr. Paul Coyne for creating Inspiren’s revolutionary hybrid presence sensing hardware, software, mobile applications, and data models, known as iN. Together, these innovations turn any hospital room into a smart one, allowing patients, staff, and families to have an optimal care experience, drastically improve patient safety and satisfaction, as well as improve provider effectiveness.

“It is truly an honor to be recognized on behalf of the Inspiren team and alongside other talented individuals who are creating remarkable products.  I am hopeful that other nurses will see the great work of the Inspiren Team and feel empowered to innovate as there are so many nurses with great ideas to improve patient care.”

# # #
NOTE: Dr. Coyne will be made available for bookings. All media inquires should be directed to Press Relations, press@inspiren.com or 516-754-0789

For a full list of award winners in Crain’s, visit: http://www.crainsnewyork.com/section/heritage-healthcare


About Paul Coyne DNP, MBA, MSF, APRN, AGPCNP-BC
Paul Coyne began his career at Goldman Sachs before transitioning to healthcare after his own triumphant stroke recovery strengthened his desire to become a nurse.  Dr. Coyne is now a board certified nurse practitioner and one of the most educated individuals in the United States, obtaining 2 bachelor’s degrees, 3 master’s degrees, and a doctorate from Columbia University, Northeastern University, and Providence College, all before he turned 30.  In addition, together, with Michael Wang, a nurse whom he met during matriculation at Columbia, he co-founded Inspiren. (http://news.columbia.edu/content/1129)

About Inspiren.
Inspiren is a healthcare technology company based out of New York City.  The company was founded by practicing nurses who partnered with world-renowned hardware and software engineers to create revolutionary and pertinent healthcare technology to improve the lives of patients and staff.

Congratulations Paul!

Best wishes,

Donna



Monday, May 15, 2017

Helen Lindsey, BSN: A quadruple amputee working to get her nursing license back

Helen Lindsey, BSN


Helen Lindsey's Facebook page says, "Living life as a Quadruple amputee has been amazing. God is using me for this journey to help others. 25 years as a Amputee. Still standing."

Helen lost her arms and legs to bacterial meningitis but not her passion for helping others. She is an Army veteran who received her BSN from Winston-Salem State University.

According to twcnews.com in Winston-Salem, N.C.

She is currently working toward getting her nursing license back, and she will be the first student in the state's nursing re-entry program to have a disability to this extent.

Lindsey will be starting the clinical portion of the program at Salemtowne Retirement Community in Winston-Salem.

Lindsey will be getting the same practice as other students -- assessing patients and administering medication -- at her own pace.

Helen's journey will be documented in a film directed by Mike Ray www.OTGFilms.com. A link to the trailer can be found below.

In addition, Helen will be the keynote speaker at the National Association of Directors of Nursing Administration in Long Term Care's (NADONA/LTC) 30th annual conference in July at Disney's Coronado Springs Resort in Lake Buena Vista, Florida.

http://www.twcnews.com/nc/triad/news/2017/04/2/quad-amputee-working-toward-nursing-license.html

https://www.youtube.com/watch?v=ZF-jO6nBrLI

https://www.nadona.org/2017-nadona-conference/#


Can you hear the applause?

Bravo Helen!!!

Wish you all the best,

Donna

Friday, May 5, 2017

Nursing students with disabilities: Faculty reflections from Access in Medical and Health Science Education Symposium

Michelle Hartman, DNP, RN, CPNP
 Duke University School of Nursing

As a faculty member at Duke University School of Nursing, I teach in an Accelerated Bachelor of Nursing Program. Teaching in this program affords me the opportunity to work with diverse individuals who are transitioning into the nursing profession. I am in awe of how students utilize and incorporate their ability and talents from their previous academic studies, jobs, and life experiences into the professional of nursing. I believe a more diverse workforce will ultimately lead to better patient outcomes. My personal definition of “diversity” is broader than the traditional categories of race, ethnicity, and gender; it also includes sexual and gender identity, as well as individuals with disabilities. 

As faculty, I am always looking for ways to support our diverse students on their journey to becoming a professional nurse. I had the opportunity in April to attend 4th Annual Access in Health Science and Medicine Symposium which is sponsored by The Coalition for Disability Access in Health Science and Medical Education. The symposium featured topics such as the student experience, psychological disabilities, documentation, international collaborations for inclusive campuses, assistive technology, and policy and legal updates.

The most compelling presentations for me were those done by students. By sharing their perspectives, I was able to see how burdened they often become by serving as the representative of students with disabilities. In this capacity as ambassador or representative, they are asked to serve on committees, start support groups, or work to resolve issues. As educators, the onus is on us to shift that burden off the students as the energies expended on these efforts shift their focus away from the inherent demands of health education programs. There were also thought provoking discussions on mental health disabilities in health and medical education settings and disclosure. A few other personal take home messages for me included:

·         The prevailing attitudes and cultures in medical and health education (specifically perfectionism and the use of the biomedical model) are the greatest barriers to the success of students with disabilities.

·        Sharing stories is crucial to changing the culture. We know that personal experiences and stories are far more influential than data in shifting mindsets. Reading the success stories of nurses and nursing students with disabilities is one of my favorite parts of the Exceptional Nurses group!

·        Get to know a contact in your Student Disability Access Office! They are excellent resources to faculty and students.

·        Be cautious of what and how you say something- our word choices can be interpreted as sources of microaggression by students experiencing disabilities. It's important that we maintain and open dialogue with our students, so they feel safe to share when they experience microaggressions. We must acknowledge our areas for growth and take accountability.

·        There are many forms of assistive technologies available to help students in the classroom and clinical setting. Although it can be overwhelming, Joshua Hori (Accessible Technology Analyst for Student Disability Center at the University of California) has a great Trello board that presents an overview of many available apps, software, and other programs: https://trello.com/b/rirGA3kZ/accessible-technology-software

I appreciate opportunities to attend professional development trainings which stretch me to think, teach, and act in different ways! I am looking forward to this upcoming semester when I can incorporate what I learned into my teaching practice.

With thanks to Dr. Hartman for this insightful guest blog post!

Please share your thoughts below,

Donna



Tuesday, April 18, 2017

Nursing professor who has multiple sclerosis teaches pediatric nursing.....and so much more!


Amy Boitnott


Kaylyn Christopher wrote the following about Amy Boitnott for UVA Today:

When class time is up, Boitnott, who keeps her balance steady by maintaining a sturdy grip on her podium, watches her students file out of the room. Then, she lowers herself onto her scooter and makes her way back to her office to tackle the next task of her day.

Eleven years ago, doctors diagnosed Boitnott with multiple sclerosis, a progressive disease that affects the central nervous system.  

“To teach a class is very taxing,” Boitnott said. “My body has to choose: I can either keep myself upright and balanced, or I can talk. It can be exhausting, so I use a scooter to get to and from class because I really can’t walk after I teach.”

“If I fall on the floor, they have to pick me up,” she said. “But it’s OK; we all need help in this world. It doesn’t mean I’m a weak person; I just have a weak body. I have a strong passion and a strong attitude about life, though, and I really hope my daughters and my students have seen that resiliency.”

Boitnott said she began to realize the magnitude of her impact when a student shared an honest confession with her about how she taught him to not pass judgment based on appearance.

“At first, that student thought ‘I got the disabled professor, the one who can’t walk,’” Boitnott said. “But now he knows he got the one who’s passionate about caring for kids. And that’s what I hope I’m remembered for.”

Read more about this inspirational nurse and educator at:
https://news.virginia.edu/content/balancing-act-pediatric-nursing-professor-manages-living-and-teaching-ms

Please share or leave a welcomed comment.

With thanks,

Donna

Friday, April 14, 2017

RIP Susan Jones: A congenital heart disease patient who beat the odds and became a cardiac nurse

Susan E. Jones, RN

Ed Blazina of the Pittsburgh Post-Gazette wrote an obituary for Susan Jones.

For Susan E. Jones, the best way to deal with a congenital heart defect was to become part of the medical community herself.

Mrs. Jones was born with only one ventricle, rather than two, in her heart, leaving her skin blue because her blood wasn’t receiving enough oxygen to carry throughout her body. She had heart surgery a day after her birth and her family was told she probably wouldn’t live very long.

But Mrs. Jones regularly defied the odds for someone with her condition and became a cardiac care nurse, working with the doctors who had cared for her at Children’s Hospital of Pittsburgh before entering health care administration with insurance providers.

She attended St. Margaret Hospital’s School of Nursing and worked as a nurse in New Jersey for two years before joining the staff at Children’s Hospital to be closer to her regular doctors.
Despite numerous surgeries — including an updated Fontan revision at age 36 — Mrs. Jones built a solid career at Children’s, eventually working to improve the record-keeping system for the cardiac unit. She later moved to Coventry Healthcare and Aetna, where she was a national project manager

Read more about Susan's remarkable journey at:

http://www.post-gazette.com/news/obituaries/2017/02/18/Obituary-Susan-E-Jones-Heart-patient-cardiac-nurse-who-defied-the-odds/stories/201702170095?pgpageversion=pgevoke

http://www.legacy.com/obituaries/triblive-tribune-review/obituary.aspx?pid=184125215


RIP Susan!

Donna

Tuesday, April 4, 2017

Anita Lesko, a nurse with Aspergers, invited to World Autism Day at the United Nations

Anita Lesko, RN, MS, CRNA
Toward Autonomy and Self-Determination-World Autism Awareness Day 2017

Anita Lesko has Asperger's syndrome. She is a nurse anesthetist, military aviation photojournalist, author, public speaker, advocate and founder of a non profit organization...and now invited speaker at the United Nations! 

The event was organized by the United Nations Department of Public Information and Department of Economic and Social Affairs, and co-sponsored by the Permanent Missions of Argentina, Armenia, Bangladesh, Bulgaria, Denmark, Ecuador, Israel, Italy, Kazakhstan and Poland.

We are so proud! Anita participated and gave voice to issues surrounding dating, marriage and parenthood for people with autism spectrum disorders.

Navigating Relationships: Dating, Marriage and Parenthood 
  • Moderator: Caren Zucker, Journalist and TV Producer, Co-author of “In a Different Key: The Story of Autism”
  • Dr. Julia Ejiogu, Founder and Director, Autism Care and Support Initiative, Nigeria
  • Hillary Freeman, Esq., Attorney, Freeman Law Offices
  • Anita Lesko, Certified Registered Nurse Anesthetist and Self-Advocate
  • Walter Suskind, Regional Spokesperson, Consumer Financial Protection Bureau, and Advocate for Sibling Engagement http://www.un.org/en/events/autismday/2017/events.shtml

  • The full proceedings can be view on the United Nations web tv*You can see Anita at marker 1:48:35 (wearing her signature hat).
http://webtv.un.org/search/toward-autonomy-and-self-determination-world-autism-awareness-day-2017/5380816054001?term=autism#full-text



Bravo Anita!!!!

With thanks,

Donna 

Sunday, March 19, 2017

Nurse amputee: Nobody told her not to try!


Mary Novotny Jeffries, RN, MS


At 11 years old, Mary Novotny Jeffries lost her leg to bone cancer. After discharge from the hospital she returned home to life with her 7 siblings; where nobody told her not to try. And, try is what she did!

She credits much of her success to her quick rebound to normal life. Between school and chores, she didn't have time to feel sorry for herself. 

In 1979, Mary launched the Families and Amputees in Motion support group while pursuing her master's degree in nursing at the University of Illinois at Chicago. Her focus was on rehabilitation nursing. At the UIC Amputee Clinic, she conducted research exploring questions regarding amputees' adjustment to limb loss, particularly in terms of body image. 

After presenting her findings, physicians and nurses soon began asking Novotny to talk to new amputees and present her information at other venues. These experiences helped to shape her passion for peer visitation. 

She founded the Amputee Coalition of America in 1986 (amputee-coalition.org) and the National Limb Loss Information Center in 1997. 

Now, she counsels and trains amputees in locales as close as Chicago and as far away as Haiti, where she traveled after the devastating earthquake of 2010.

Mary considers herself a "lucky" cancer patient. 

"I rarely felt like what I did was work.... Giving to help others is not work. It rewards the giver far more than one can imagine."

Click on the articles below to read more about Mary's remarkable journey.


Cheers!

Donna

Monday, March 13, 2017

Exceptional Nurse celebrates Anne Bourque RN, a colon cancer survivor!



March is colorectal cancer awareness month. 
Exceptional Nurse celebrates, Anne Bourque RN, a colon cancer survivor!

In 2014, Anne wrote:

I am a registered nurse and started working at City of Hope in 1980 when I was 25. I can honestly say accepting a job here was one of the best decisions that I have made in my life. I have worked with some of the most talented and remarkable colleagues, and knowing many of them for 30-plus years has enriched my life tremendously.

Fast forward to 2002: Then, as now, I was the clinical nursing director of hematology and hematopoietic stem cell transplantation. I was divorced, with two children  – Elizabeth, who was 19, and Gregory, who was 14.

I was 47, had some bleeding and went for a colonoscopy at a different hospital. I had no desire to have any City of Hope physician see me with less than my normal work clothes on, so naturally, I would have the test done elsewhere.

On Feb. 13, on the colonoscopy table, I found out that I had colon cancer.

Wednesday, March 1, 2017

No mud no lotus: True for nurses with disabilities?



"Thich Nhat Hanh, the Vietnames Zen Buddhist spiritual leader, has said, "No mud, no lotus." Without suffering through the mud, you cannot find the happiness of the lotus. Without grit, there is no pearl. He also believes that when we know how to suffer, we suffer less."

"Thich Nhat Hanh acknowledges that because suffering can feel so bad, we try to run away from it or cover it up by consuming. But unless we’re able to face our suffering, we can’t be present and available to life, and happiness will continue to elude us. Nhat Hanh shares how the practices of stopping, mindful breathing, and deep concentration can generate the energy of mindfulness within our daily lives."


Mucking around in the mud may be an essential part of the journey for many nurses and nursing students with disabilities. Do you agree?

Please share your thoughts,

Donna

https://www.amazon.com/No-Mud-Lotus-Transforming-Suffering/dp/1937006859/ref=sr_1_1?s=books&ie=UTF8&qid=1485022824&sr=1-1&keywords=no+mud+no+lotus

Wednesday, February 22, 2017

Research project to address adults with autism: Nurse with autism on the research team!

Dr. Teal Benevides
On February 2, 2017, Danielle Harris, Senior Media Relations Coordinator at Augusta University announced the news of an exciting research project.

Research to address the needs of autistic adults remains relatively unchartered territory, but Augusta University Occupational Therapist Teal Benevides hopes to shed light on this population’s critical needs in her latest project “Priority Setting to Improve Health Outcomes: Autistic Adults and Other Stakeholders Engage Together.”

The prevalence of autism spectrum disorders has increased exponentially in the past decade. Although extensive resources are provided to support children with autism, adults with autism are at increased risk for a variety of chronic health conditions,” Benevides said. “Little is being done to address the health needs that are important to this group and our team and I are working hard to change that.”

For this project, Benevides will be working with a team of critically-acclaimed partners such as Autism Speaks board member and Adelphi University professor of special education Dr. Stephen Shore and Global Autism Consulting Organization founder Anita Lesko, a Columbia University graduate and certified registered nurse anesthetist. In addition to being scholars, Shore and Lesko bring a special perspective to the project as they both are adults with autism.


Anita Lesko, CRNA

Read more about this exciting project at:
http://jagwire.augusta.edu/archives/40792



Donna

Monday, February 13, 2017

Permanent Hearing Loss as a Mom and Nurse: What do I do about…..??




      
       My name is Sarah and I am now 41 years old. I lost a large percentage of my hearing about 3 years ago, suddenly, with no definitive reason.  wear bilateral hearing aids and have severe tinnitus that keeps me from ever having a moment of quiet...EVER.  That in itself is enough to make you feel like you are losing your mind. Constant high pitched, loud ringing. 

      It takes so much brainpower and patience to filter through what I think I hear, the context, read lips and compile a thought that seems to make sense. I get it wrong A LOT even with the hearing aids in. I laugh at myself most of the time, like the time my husband and I were at an outdoor orchestra concert.  He asked me if the piece was from Mozart.  I was shocked and offended and answered a stern, “NO, I ABSOLUTELY DID NOT FART!” (We do not even use that word; we are fancy, high-class people who say, “toot”)! There are plenty of funny times like that but I want to speak a bit to the not so funny times.

           I am a registered nurse. I took a few years away from my career to have three beautiful, most-of-the-time charming and delightful children.   It was always in our life “plan” (ha-ha) that I would go back to work.  After the birth of our youngest son, my hearing took a sudden decline.  I went to the ENT with the thought that I had ear infections or maybe needed tubes. Nothing of the sort…..failed hearing tests, maybe otosclerosis, and sent to a surgeon for possible stapes transplants. 

      As I meet with the specialist, my calendar in hand ready to schedule my surgery, I was told, “Sorry to tell you this but you have significant nerve damage, need bilateral hearing aides, loss is progressive and irreversible and you are not a surgical candidate”.  I held back the tears of shock while I attempted to ask some questions.  

      But, what do I do about my kids?  They are still so young.  My husband is a doctor; he works a lot including night shifts.  How will I keep my kids safe crossing the road if I do not hear the cars or hear them cry out at night (cannot wear hearing aides while you sleep) or struggling in the pool?  I do not hear the doors in my house open even with a door alarm, much less hear someone trying to come in and hurt or steal from us. 

      I have worried and prayed… please maintain enough hearing until my kids are not as dependent on me for their safety.   I have been able to get by on learning the feeling and sounds of each child’s footsteps, reading lips, strengthening other senses, and depending on the other members in our house to hear and translate for me. And, no more night shifts for hubby! 

     And what do I do about my nursing career? have practiced nursing in many areas, but my true love and heart goes into Cardiac Intensive Care and Hospice nursing. In one area, you do all you can to “save” your patient and in the other you do everything you can to ease their passing.  What is similar is the opportunity to intimately know your patients and their family; their story, both medically and personally, their habits, likes, dislikes, the special way their heart beats, the way they inhale, handle pain, medicines, or the change in their vital signs during a bed bath. 

     I cannot hear my patient’s lung or heart sounds, call bells or questions anymore.  Amplified stethoscopes are helpful but I have such loud tinnitus, that I cannot hear over the noise. How would I manage in an emergency? How could I remove hearing aids to listen with the stethoscope, and then replace the hearing aids to hear questions and orders? I could use an electronic stethoscope, but I personally do not feel safe as a cardiac ICU nurse without my own “ears”.  I was/ am afraid of missing something with patients who are so fragile. I realized that I would not feel comfortable or as competent at the bedside as I had before.

      I heard many "reassuring" comments.  You are lucky your husband is a doctor and you do not need to work, many people have it worse, your career should not define you, etc.  Here is the thing; I went into nursing because it DOES define me.  I am a caregiver, a nurturer. I am smart, witty, and work well to comfort others.  I can think fast in an emergency, see concern on people's faces, and translate for patients and families the physician speak. I AM A NURSE in my heart and soul.  So what do I do about…???….I grieve, get mad and frustrated, bargain, beg, pray and cry a lot.

    Then, I put on my big girl panties and went back to school for medical documentation, billing and coding.  I took and passed my CCS exam; I opened myself to finding another passion. 

      Writing fell into my lap and I love it!  I will never do or hear many things again, but I am grateful for what I have.  There is so much more to who I am now because of all of the “what abouts…?”.  

I am a nurse and the good I do in the world stems from that part of my heart.


       This is my story.  It by no means indicates that nurses cannot practice bedside care and do it well with hearing loss. The newest technology and hearing assistance devices can bridge the hearing loss gap to providing care.   Trained in cardiac critical care, I see and treat every patient with that degree of intensity.  I felt like I could not provide that level of care to my patients. My fear of missing something life altering is too great so I sadly chose to leave that nursing career path.


Sarah Matacale RN, BSN, CCS can be reached at sarah.matacale@gmail.com 

Sunday, February 12, 2017

Clear surgical/face mask arrives!



The Association of Medical Professionals with Hearing Losses announced the long awaited arrival of clear surgical masks.

Read the full announcement and details athttps://amphl.org/fda-approved-clear-surgical-masks-now-available/

Cheers!

Donna

Wednesday, February 8, 2017

Matthew 6:26 inspires artwork of a nurse living with Complex Regional Pain Syndrome (CRPS)

Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, "my rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it." 





February 7, 2017


               Thank you for the opportunity to share my artwork. I hope you will take a moment to read what this painting represents and what it means to me.      

I based this painting on the Bible verse Matthew 6:26, that says “Look at the bird of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” This verse means a lot to me, because it reminds me to fully trust in God. Living with CRPS (Complex Regional Pain Syndrome), it is easy to feel anxious about the future.  This verse reminds me that the Lord cares for me, knows my every need, and will provide.
              
               The trees represent each season of the year: spring, summer, fall, and winter. They also represent the seasons of life. This symbolizes that no matter what season we are going through in life, whether good times or hard times, it reminds us that the Lord is always with us in every season life brings.

               The birds in the painting are a representation of the birds mentioned in Matthew 6:26. However, notice that all of the birds are the same color except for one. One bird is orange, while the rest are black.  The orange bird represents a person with CRPS. This signifies how CRPS is an invisible illness, and how patients like me often blend in with everyone else even though we are different.  Even though you cannot see our pain, we try our best every day to fly right along next to the other birds.     


        Thank you,

                                                                                Alyssa Skillman


Alyssa Skillman can be reached at: alyssaskillman@gmail.com

Monday, January 23, 2017

Army nurse set on fire by colleague wants to resume career




In September 2016, First Lieutenant Katie Ann Blanchard, a nurse in the Army serving at Ft. Leavenworth in Kansas, was set on fire and attacked by a colleague. Almost 20 percent of her body was severely burned, including her entire face and ears, and parts of her arm and chest. 

The army sent her to San Antonio to be treated at SAMMC's burn victim unit where she's had countless surgeries and been heavily medicated. She's also been meeting with behavioral health physicians who have been helping her with the PTSD she has experienced since the attack

Blanchard hopes to continue her career in nursing after she recovers more and has been inspired by the nurses she’s met at SAMMC to work with burn victims one day. 


Katie Ann, we salute you!

 Please let us know how we can help you in your recovery and return

 to nursing practice.

We wish you all the best,

Donna Maheady
President of www.ExceptionalNurse.com


http://www.kvue.com/news/health/army-nurse-set-on-fire-by-colleague-speaks-out-about-her-recoverys/389711041

http://www.nydailynews.com/news/crime/kansas-hospital-worker-sets-boss-fire-cuts-scissors-article-1.2788388

https://www.facebook.com/smilesforkatieann/?fref=ts


Sunday, January 15, 2017

Martin Luther King Day: How social justice led to disability justice for nurses with disabilities



The work of Dr. Martin Luther King has lived on and impacted so many-- including nurses with disabilities. The civil rights movement led the way to passage of Section 504 of the Rehabilitation Act in 1977 and the Americans with Disabilities Act in 1990.

Alice Wong penned the following message In a blog post originally published on January 16, 2014 for BK Nation“Disability Justice and Social Justice: Entwined Histories and Futures”. Alice Wong is the Project Coordinator of the Disability Visibility Project:


“Just as Dr. King and the many activists involved in the civil rights movement were influenced by Gandhi and Thoreau’s use of civil obedience, leaders of the disability- rights movement witnessed first-hand the power of non-violence in the 1950s and 1960s.

Similarities exist among the Montgomery bus boycott, the Birmingham campaign in 1963, and actions taken by disabled activists in the 1970s. Section 504 of The Rehabilitation Act prohibits discrimination against people with disabilities from participating in any program or activity receiving federal funds based on incapacity.

Secretary of Health, Education, and Welfare Joseph Califano refused to sign regulations related to Section 504. On April 5, 1977, non-violent protests and demonstrations began nationwide. A group of disabled activists began a sit-in at the San Francisco offices of HEW, the longest such demonstration ever undertaken. Kitty Cone, one of the demonstrators at the 504 sit-in, recalls:

“At every moment, we felt ourselves the descendants of the civil rights movement of the ’60s. We learned about sit-ins from the civil rights movement, we sang freedom songs to keep up morale, and consciously show the connection between the two movements. We always drew the parallels. About public transportation we said we can’t even get on the back of the bus.”

On April 28, 1977, Califano signed the regulations and the historic protest ended. Section 504 codified civil rights for people with disabilities and the notion that people with disabilities are a distinct minority group and protected those individuals from discrimination.”

The disability rights movement continued to seek justice in the courts and in the halls of Congress. The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990.

The spirit and letter of the law continues to be challenged as more and more people with disabilities push the door open in a variety of professions. The nursing profession is one example. Nurses with vision and hearing loss, mental and chronic illness, spinal cord injuries and other disabling conditions continue to face discrimination and struggle to obtain access to educational programs and employment opportunities. Much has been accomplished...but much remains to be done.

Today, we remember and give thanks for the work of Dr. Martin Luther King, Jr. 

“Injustice anywhere is a threat to justice everywhere.” 
(Dr. Martin Luther King, Jr.)